CRPS Question: Itching

One more thing: have you been able to find a doctor to help get pressure off of your neck or back - or able to try an inversion table? I failed to ask that in my post. These might appear to be long shots, but if you are able, you could find relief. Blessings to you!

I hope by now you have found relief and are in remission. CRPS is a pernicious disease. I have had it for over 20 years. My mother and brother were diagnosed with it. One of my daughters has it.
In my experience— learning the hard way due to a much delayed diagnosis the first time and then delay in treatment as well, one of the most important things you can do is to start desensitizing therapy right away.
I learned several strategies from a physical therapist familiar with CRPS. They said the worst thing is to not touch your affected limb. It’s so painful to touch that we tend not to do it.
even despite medical treatment, including injections.
While I have found injections to be the most effective for me, if not done in a timely manner I have found them to be less or not effective.
What I learned from my first experience with CRPS was that using methods like alternating warm and cold water foot baths / compresses, light touch with a sensory brush/sponge, soft fabric / slightly different fabric and so on helped manage CRPS pain and to delimit it’s spread.

Every person who has CRPS may have different levels of pain. But with professional guidance we all can learn what we are capable of doing for ourselves in addition ti treatment.

I had not been told with my first event that CRPS is a lifelong disease. That you can put it in remission but it might return with your next injury or surgery.

I have it now and have had several periods in which it’s been active since about 1999.

I cannot give medical advice, and please do not view my suggestions that way.

I can say that it is critical to read legitimate sources on CRPS and learn from physical therapists who know CRPS and physicians who specialize in treating it to expand your capacity to care for yourself.

Cleveland clinic just got a federal grant to explore stem cell treatment for CRPS. That would be an amazing opportunity to help people whose CRPS refuses to respond to traditional treatment.

My daughter who has it has been suffering more than 6 years without remission. She now has only one functional limb and relies on an electric wheelchair to get around.

Her pain is relentless. She has used desensitizing strategies to move the upper reaches of CRPS on her legs downward. She has been able to keep one leg from getting as bad as the one originally injured.

But delays in treatment (over a year) really harmed her chances of remission. It’s a constant struggle. Her life has been forever changed for the worse.

I hope anyone with CRPS reads all they can and learns with their treatment team about the mechanisms of CRPS, including inflammation, and the variety of symptoms and systemic impacts CRPS could have if not treated, so they can get on top of it and put it into remission as soon as possible.

Hello @blupino, welcome to Connect. Thank you for sharing your experiences with CRPS and what has helped you over the years with flares. I'm sorry that it seems to have run through your family as well.

Your post is going to help many members suffering from CRPS. Thankfully, Cleveland Clinic keeps plugging along with potential stem cell therapy research. Fingers crossed!

I'm so sorry for your daughter's struggles. Her situation makes me think about folks that I was in Mayo Pain Rehab Center with. Some people enter the program in wheelchairs with such limitations and end up walking out on their own after 3 weeks. It was truly an amazing transformation to witness.

How is your condition presently? Have you benefited from any lifestyle changes to help manage CRPS?

I have RSD/CRPS type 2. I began itching awhile ago and it drives me nuts. My head itches all the time. When I go to sleep the itching is either on my back or on both hips. I was injured in 2017 during foot reconstruction surgery when some nerves were clipped. Main important nerves. No one would confirm this happen until it was too late to start treatment. I now have it full body. I lose my voice, I get rashes, tremors, fainting is a good one, you get no notice. Stomach issues, muscles shrinking, I walk with a severe limp....Pain meds do not help. The spasms on the damaged foot are 20 on the pain scale. But believe it or not the worst thing is exhaustion. what started in my foot has worked its way up my leg. The constant pain exhausts me. I sleep until noon, take a couple hours nap around 4:00 and I'm in bed by 12:00....So I'm on 12 hours and off 12 hours. I can not function normally anymore. I have lost my concentration, I can't read. I was a gourmet cook, I burn things now....it's horrific. And the worst part is the surgeon knew this occurred during the surgery and played dumb. He got the Neurologist I went to to falsify his test results. The Medical Board in my state wouldn't even look into the case, and I had everything in medical records, Portal messages, e-mails and phone calls. they said it was all just "alleged".......it is truly a nightmare.

Im sorry for your suffering! I’m also very allergic and found I have an allergy to adhesives, after a severe reaction to the spray to attach the draping for surgery on my back. I knew I broke out in a rash from bandages, then a rash from a pain patch years ago.
Medications too, most likely cause.

Hi....does anyone else have internal itching all over your body from RSD/CRPS. I have type 2 RSD for five years now and it started with itching in both hips at night. Then it went to my head and the last couple of days it's all over my body. No rash...it feels like ants are crawling around inside my body. Tried Benadryl and it does nothing...it's literally driving me crazy. My pain doctor who knew everything about this condition left his practice and is now selling "BIOLYTE" it's IV in a bottle....I wish him well but currently can not find a doctor as knowledgeable as he was...

Hello. I have no answer for you as I had never heard of RSD/CRPS until I read your post. I feel for you and wish there was a solution and a doctor for your itching. I've got a dry skin sensation in my right thigh that started 2+ years ago. The amount of lotion, creams and oils I have used is ridiculous and all to no avail. My doctor basically said hmmmmm when I asked him about it. Our bodies are such a mystery at time. Best of luck.

My son had that and only thing that did away with it was some steroid pills you need to go to your Dr or skin Dr for some

My suggestion is that you contact an anesthesiologist that specializes in pain management. I learned about this step from the Jacksonville Mayo Clinic. They also suggested that I go to the university of North Carolina Department of anesthesiology for pain management since it is “in my backyard “. IE…a teaching school. It paid off. I’ve had a Boston Scientific Implant since March of 2022. I got relief not only from the pain but also from the itch that I had in my left foot.

Look into this. There are folks that have not gotten relief from the implant but my CRPS started in my left foot/leg and mirrored into my right foot and leg. I was very careful about following their instructions and the implant worked. I wish you the best! GrannyZoo.

Can you go get a steroid shot or pills that’s what got rid of my sons itching when he had gastritis in his stomach he itched so bad